Isolation and loneliness are a shared experience and a source of distress not only for people living with dementia, but also for their caregivers, according to new study findings.
Individualized interventions, however, will reduce the intensity of that social loss and improve quality of life for both groups along the disease trajectory, research published Tuesday in The Gerontologist suggests. Investigators from the University of California, San Francisco, and Harvard Medical School analyzed multiple studies to explore the challenges dementia brings to the social lives of both individuals and their caregivers.
As their memories failed, study participants living with dementia lost their social networks as conversations with friends and family became more difficult. But the researchers also found that caregivers — spouses, adult children and friends — became isolated as their responsibilities mounted and they experienced grief over the loss of their relationship with their loved ones.
“Unmet social needs negatively impact quality of life, and that can lead to health outcomes like depression and cardiovascular disease, as well as high healthcare use and early death,” Ashwin Kotwal, MD, first author and assisted professor of medicine in the UCSF Division of Geriatrics, said in a statement. “We know from previous research that older adults with higher levels of social isolation have more than double the odds of nursing home placement.”
Study participants described their ability to maintain social lives as a “moving target” as the disease progressed. Caregivers described experiencing social withdrawal and making adjustments to their expectations as they struggled to meet the changing needs of their loved ones with dementia.
Another recent UCSF-led study of married couples coping with dementia also found that relationships status affected feelings of depression and loneliness. According to that study, partners of people living with dementia who were highly satisfied with their relationships reported experiencing more loneliness than they had previously. Spouses in poor relationships were not affected by their partner’s dementia, but they had higher rates of depression and loneliness overall.
“People who are really invested in their marriage or partnerships have more to lose when one partner develops dementia,” Kotwal said. “But those with lower marital quality have already lost the emotional support from the marriage that can be protective against loneliness and depression.”
Senior living held up as solution to loneliness
The senior living industry has held up the assisted living model as a solution to strengthening social connections for older adults.
A summer 2022 report from the American Seniors Housing Association and ATI Advisory found that senior living communities improved quality of life during the pandemic through cohesive social environments and encouragement of residents to participate in social activities. Residents, the study found, were more likely to have greater social, physical and intellectual wellness than their counterparts living in the greater community.
The desire for socialization among older adults also has helped the senior living industry increase occupancy, as older adults moved into communities for opportunities for friendship and socialization, according to data from the National Investment Center for Seniors Housing & Care.
And in 2021, a survey from Activated Insights reported that just 20% of senior living residents reported feeling “severely lonely.” The survey revealed a potential decline in loneliness among older adults in assisted living and other congregate living settings from before the pandemic.
Addressing the loneliness epidemic
Loneliness was labeled a public health crisis last spring in a report from US Surgeon General Vivek Murthy, MD. But the UCSF researchers noted that there is little evidence of interventions for individuals living with dementia and their caregivers.
Screenings by clinicians of caregivers for individuals living with dementia were recommended by the UCSF researchers to help identify loneliness and isolation and to provide interventions to address quality of life. The study also recommended more flexible support policies that address social connections along the disease trajectory, not just during advanced disease stages.
A new Medicare dementia care model — Guiding an Improvement Dementia Experience (GUIDE) Model — was mentioned in the study as a way to address those interventions through new reimbursement models.
